Today we’re catching up with three self-advocates from previous episodes! Advocating for the Down syndrome community from the steps of Capitol Hill we catch up with self-advocates Kayla McKeon, Matthew Schwab, and Charlotte Woodward! We were so excited to chat with them during the National Down Syndrome Society’s Down Syndrome Advocacy Conference in Washington DC! From advocating equal rights in employment, healthcare, and education for people with Down syndrome these self-advocates are putting ...
Apr 25, 2023•50 min
Friends, some harmful statements were made recently by an online commentator about a recent SKIMS campaign and it got us thinking about all things inclusivity in the media. She who will not be named asked, “how far are we going to take this inclusivity thing?” Girl, we’re taking this inclusivity thing ALL the way! Today we ask all the questions that harmful narratives like this leave us with. What’s worthy of being seen as beautiful? Are companies being genuine or just checking an inclusion box?...
Apr 18, 2023•54 min
Friends, next week many of us are headed to DC for the NDSS Down Syndrome Advocacy Conference! Take a (re) listen to this fantastic episode! The last time we chatted with Kayla McKeon back in November 2018, she was lobbying for the ABLE to Work act that allows individuals with disabilities to save money without losing their benefits. Today, the act has passed, but Kayla (the first registered lobbyist with Down Syndrome) has certainly not stopped working hard! Her and Ashley Helsing are part of t...
Apr 11, 2023•45 min
Sofia Sanchez helped us celebrate World Down Syndrome Day on March 21st and today her Mom Jennifer Varanini Sanchez is here to chat with us! This mother of four opens up about the Down syndrome diagnosis of her youngest son Joaquin at 3-months-old that led her on a pursuit to learning more. Listen to how a charitable donation in honor of a family member's memory led this mama on a path to completing her family through international adoption. We chat about celebrating each child’s individual gift...
Apr 04, 2023•46 min
Hey, Friends! Before next week’s new episode we want to (re) share another one of our favorite self-advocate episodes! Matthew Schwab is a 25 year old man with Down syndrome who is absolutely slaying it at life. There’s no better way to describe him! Since we last chatted with him in 2020, Matthew has moved into an apartment with his brother and started his own podcast! He’s officially entered the world of “adulting” where there’s no one around to remind you to do your chores! Today we’re chatti...
Mar 28, 2023•42 min
Today we have a very special guest here to celebrate World Down Syndrome Day, the one and only Sofia Sanchez!! We just happen to be the first podcast interview (many more to come!) for this actress, model, author, and self-advocate. She has some fun projects going on: a new book, cartoon series, a feature film, and advocating on capital hill, just to name a few! Sofia gives us a tease of her experiences filming ‘The Hunger Games: The Ballad of Songbirds & Snakes’ coming to theaters this Nove...
Mar 21, 2023•28 min
For the last 5 years, we’ve worked hard to bring you expert resources, meaningful connections, and loving encouragement each and every week. And we’re so grateful for those of you who have stuck with us for the last 200 episodes! This is a milestone we are celebrating with ALL of you! You’ve listened to us navigate parenthood, education, new diagnoses, and so much more with our kiddos. And today we’re taking you behind the scenes of the last 5 years! Join us for a chat about our origin story, qu...
Mar 14, 2023•1 hr 11 min
Take it from us, parenting is hard and those first years can feel like the hardest, especially with an unexpected diagnosis. But we promise that when you look back, you’re going to remember the sweet moments the most. Today’s episode is for all the new parents in the Down syndrome community. We’re sharing all the items we wish we used, the wisdom we wish we had (especially when it comes to all the therapies..) and what we wish we would have told ourselves to get through those early years. We’re ...
Mar 07, 2023•58 min
Raise your hand if the phone number of your kid's school popping up makes your stomach drop? Hands raised over here too, friends. Today, we (Heather + Josh Avis) are chatting about recent challenges with our children’s IEPs.. what’s working, what’s not working, and why we’ve hired a lawyer. We’re asking tough questions.. Why does it feel like this system is built on something broken? Are separate spaces made to actually accommodate children with disabilities or to make others feel more comfortab...
Feb 28, 2023•43 min
Friends! Did you know that not only are we in the middle of Black History Month but also Inclusion Month?! Today we’re honoring the adversities faced by advocates before us and celebrating the changes we’re making now that will impact future generations. After all, the end goal is the same: creating spaces of belonging for everyone, and we mean everyone. And we know we’re in a vulnerable moment in society, and in order to make lasting changes for future generations, we need to put in the hard (s...
Feb 21, 2023•59 min
Happy Valentine’s Day, friends! In honor of the holiday, we have three very special guests joining us.. Josh, Andy, & Chris! That’s right! We each sat down with our husbands to answer all of your questions about relationship dynamics and Down syndrome. How do you make time for each other (and away from each other)? How do you team up to advocate for your child? How do you process your feelings after the diagnosis? We’re not experts or anything friends, but if there’s one thing we’ve learned ...
Feb 14, 2023•1 hr 3 min
Happy February, friends! We’re celebrating Black History Month with two of our favorite mamas (and returning guests!), Kelli Caughman and Crystal Lotterberry. Both of these ladies are raising kids with Down syndrome while running their new non-profit organization: The Black Down Syndrome Association. And friends, the work they’re doing is SO good. Today we’re talking about the many inequalities Black individuals with DS face, tokenism vs. intentionality, and how we can advocate and support every...
Feb 07, 2023•1 hr 8 min
April Aguilera is a mother of three beautiful girls, including her daughter Paloma, who has Down syndrome. She is also the writer of the short film, “For Paloma,” that stars brilliant actors with DS and details a mother’s unexpected journey through receiving a birth diagnosis. We’re so grateful April has joined us today to chat about undoing ableism as a mother of a disabled child, creating “For Paloma,” and disability representation in the media. We’re also getting vulnerable about mental healt...
Jan 31, 2023•1 hr 3 min
It’s a new year and we have a new recording platform! Which means we now have access to sound effects.. so you’re welcome for that! We’re back with new episodes all year long, starting with a conversation about what we’ve been up to these last couple of months and what we’re doing (or better yet, NOT doing) in 2023! We’re rejecting hustle culture and prioritizing connections over accomplishments this year! Who’s with us!? Join us for a chat about all the things on our minds as we head into this ...
Jan 24, 2023•1 hr 9 min
You know how much we love celebrating people with Down syndrome all year long! We’re so excited for all the amazing self-advocates doing big things. But if you’re a parent of a child with DS who felt a little lost, sad, and maybe even lied to when you see certain posts on the internet.. then this episode is for you. We’re chatting about what happens when your child with Down syndrome doesn’t achieve all the things our society celebrates. Are they still worthy? Where does our value come from if n...
Jan 17, 2023•37 min
Dr. Priya Lalvani began working with previously institutionalized adults with disabilities in her early twenties.. she later gave birth to her now 20 year old daughter with Down syndrome. She’s been thinking pretty deeply about disability rights for many years and today she’s invited us to do the same. We’re questioning some common practices that might actually be rooted in ableism.. Why do we use the term “fully included?” Why don’t we teach about disability in the classroom? What does it mean ...
Jan 10, 2023•59 min
Did you know that individuals with Down syndrome are frequently denied organ transplants? Just because they have a disability. We can’t believe this is a thing that’s still happening, but we are SO glad that there are people pushing back on this discrimination. Today in this episode, we are sharing two very important interviews with some extraordinary activists: Charlotte Woodward (NDSS employee + self-advocate w/DS), Bart Devon (senior director of public policy at NDSS), & Christy Sellers (...
Jan 03, 2023•55 min
Hey friends! We want to (re)share a VERY important episode with all of you.. A few months ago we had the chance to attend the Down Syndrome Diagnosis Network Rockin’ Mom’s Retreat and meet SO many wonderful women! And our girl Mercedes grabbed a microphone and sat down with a few lucky mamas from the DSDN Black Families group to chat all about diversity within the Down syndrome community! These mamas shared about what it’s like to google “Down syndrome” and not see a picture of a child that look...
Dec 27, 2022•33 min
Tis the season to be jolly.. and maybe also a little stressed?! Because let’s face it, the holidays are filled with fun and joy and magic but they can also get a little complicated. What are some of the challenges you’re anticipating? Maybe your family members have unrealistic expectations of your children with disabilities? Maybe your kiddos get a little overstimulated at times? Maybe you feel like there’s an extra pressure on your child with Down syndrome? No matter where you find yourself thi...
Dec 20, 2022•53 min
When it comes to thinking about the future for your child with Down syndrome, we know that even hearing the words “special needs trust” can be stressful! How do you even begin to save enough money? What will happen to your son or daughter if something happens to you? What is expected of their siblings? So much to unpack here. That’s why we’re thankful to have Phillip Clark on the show once again to walk us through his planning strategies that actually work! For your WHOLE family! As a brother to...
Dec 13, 2022•48 min
You asked for it, friends! We’re back with another important conversation about disability in the church! We really appreciate all the feedback you gave us and we’re diving into it today. We’re asking.. Are disability ministries actually creating more separation in the church? Do pastors receive training on inclusion in seminary? And who’s responsibility is it to get inclusive practices started? Plus, we’re sharing some examples from you all about what to do (or not to do) when welcoming in a ch...
Dec 06, 2022•46 min
Holly Simon is a mama on an advocacy mission.. all because of her son Nate, who was born with Down syndrome almost 20 years ago! Now, he’s the CEO of 21 Pineapples, a t-shirt company that’s changing the world, one Hawaiian shirt at a time. And though Nate is the face of 21 Pineapples, Holly’s goal is to use this opportunity to support the WHOLE disabilities community.. with creative employment opportunities and fierce advocacy for everyone. We love Holly’s energy and we’re so excited to chat wit...
Nov 29, 2022•54 min
Tis’ the season to support small business that are shifting the narrative in BIG ways! Check out our 2022 HOLIDAY GIFT GUIDE for our personal recommendations on gifts for everyone (and we mean EVERYONE) in your life. We’re shouting out diverse companies that support our community and sell wonderful products! Shop for books and bikes, art pieces and experiences, silk toys and sensory bins, + so much more using our links! It’s time to open your laptop and get ready to make some loved ones very hap...
Nov 22, 2022•44 min
If you’ve been with us since the beginning then you might remember why this podcast started.. Micha was looking for more information on the best toothbrush for her son with Down syndrome. She and Heather quickly realized there was no information out there about dentistry and DS.. and especially no podcasts about it. So they called Mercedes and started this one.. vowing to have a dentist on as a guest! And today (nearly 200 episodes later..) we are SO excited to share an interview with Samantha H...
Nov 15, 2022•48 min
You’ve probably seen the conversation surrounding Down syndrome and abortion that recently took place on Netflix’s popular dating show, “Love Is Blind.” When discussing family planning with her new fiancé, a contestant on the show stated that she would likely terminate a pregnancy if given a Down syndrome diagnosis, after seeing the “trauma” it causes a family. Here’s the thing: this contestant is a pediatric speech therapist who is very familiar with children who have Down syndrome. So we have ...
Nov 08, 2022•52 min
We had SO much fun celebrating Down Syndrome Awareness Month in October. We featured many wonderful self-advocates who are shifting the DS narrative in big ways. And we’re so excited for all of them. But if you’re a parent of a child with DS who felt a little lost, sad, and maybe even lied to this past month.. then this episode is for you. We’re chatting about what happens when your child with Down syndrome doesn’t achieve all the things our society celebrates. Are they still worthy? Where does ...
Nov 01, 2022•48 min
Madison Tevlin is a young woman with Down syndrome who enjoys listening to music, hanging out with her friends, and hosting her own talk show (she’s basically living OUR dream). In her mini interview series titled “Who do you think I am?” Madison connects with people from diverse backgrounds to get to the heart of who they really are. When she’s not on camera, she’s busting myths about Down syndrome on her Instagram page! Today, Madison is sharing all about her advocacy work, her future goals, a...
Oct 25, 2022•32 min
Matthew Schwab is a 25 year old man with Down syndrome who is absolutely slaying it at life. There’s no better way to describe him! Since we last chatted with him in 2020, Matthew has moved into an apartment with his brother and started his own podcast! He’s officially entered the world of “adulting” where there’s no one around to remind you to do your chores! Today we’re chatting about the highs and lows of living away from home, the future of Matthew’s relationship (and why the law makes it SO...
Oct 18, 2022•42 min
When it came time for Jeremy to move away from home, he soon realized that the housing options available didn’t suit him. That’s until his older brother Nathaniel (who you may recognize from episode 122) started Cohome, an inclusive housing program in Morristown, New Jersey. Today, Jeremy lives independently at Cohome and spends his time working at a restaurant, ballroom dancing, and book writing. He also happens to be Micha’s neighbor (we’re jealous!) which means he has become her son Ace’s uno...
Oct 11, 2022•42 min
Happy Down Syndrome Awareness Month! We’re celebrating all month long with guests who are rockin’ an extra chromosome! And today we have a very special sibling duo.. Anthony & Dana Sciullo from @ndssorg ! Ever wondered what sibling relationships will look like when your kids with and without DS are all grown up.. our guests today are giving us a little sneak peek! Plus, we’re getting real about what it’s like to grow up with a sibling who has Down syndrome. We’re chatting about the pressure ...
Oct 04, 2022•44 min
